The Drama of a Patient with a Rare Disease

The following article tells the story – a true one, unfortunately – of a citizen who, under the present conditions of the Greek public health system, is struggling to stay alive. We felt that it was our duty to inform the public with a clear picture of what some of our fellow citizens have to face in Greece who are also, let’s not forget, European citizens.

Niko (not his real name) is 33 years old, married, with a five year old daughter and has been unemployed for the last 3 years. In 2011, after suffering pains in his abdomen and after a huge number of diagnostic tests, it was discovered that he suffers from a rare disease – Peutz Jegher Sydrome.

This is a syndrome which is characterized by a cluster of numerous polyps in the small intestine (usually appearing after severe anemia) and there is a danger that, without any further warning symptoms, they may develop into cancer.

But Niko is doubly unfortunate, because he has hemophilia. So if he has a blood vessel injury, the whole process of blood clotting is retarded and without the proper treatment, he may bleed to death.

And so it was that, at the suggestion of a gastro-enderologist at a leading hospital in Athens, the patient was rapidly transferred to a specialist in England where his condition dictated that he be operated on immediately. Since then, the doctor’s advice has been that Niko have certain tests in Greece every two years and, depending on the results, go back to England for therapy and little by little remove some of these polyps.

It’s evident that Niko will have to travel abroad many times in his lifetime – at least until Greece has what is required to help him (a double balloon enteroscopy). But the economic burden is heavy; according to Greek law, he has to pay 10% of the medical fees to the English hospital.

Since 2011, when he and his wife became unemployed because of the economic crisis, and with their small daughter sharing their fate, he has lost all self-respect. These new health costs have taken away all hope – at the age of 33.

This inhuman law that insists he has to pay 10% – with no regard as to his financial ability. The amount is a mountain in his case. He cannot even fight for his life and his family is desperate to find a solution. He is already late for his next life-saving visit to England because he cannot possibly collect the money required (3,500 pounds). The patient, like all the patients of IKA/EOPPY who cannot be treated in Greece, have paid into their health insurance scheme for years before becoming unemployed, and have now lost their access to public health. So finally, such people are condemned to die.

When will the Ministry of Health find a solution to this and other extremely serious problems?

We, as a volunteer community practice, apart from trying to help as many patients as we can, consider it our duty to inform the public (in Greece and abroad) of the unbelievably sad situation of Greek public health care. It is time for the Ministry of Health to care enough to find some solutions for so many unfortunate people.